About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Friday, December 31, 2010

Happy New Year! Hoping everyone is having a fun, safe New Years Eve! Today is my wonderful husbands birthday and we've been celebrating all day! First thing this morning, Mom and Vicente took us to breakfast @ IHOP! Went to hang out @ Moms for a bit afterwards and played "SpiceyFarkle" that Dorinda gave us for Christmas and Mom and Vicente loved it! Mom won the first game and I won the second! Then my brother-in-law Greg and nephew Davis took us to dinner @ Red Lobster! It was great seeing them, as they just got back from visiting Greg's younger brother Terry, his new wife Michelle and her 3 boys in WA, State!

Santa brought us a wonderful gift this year - a little sister for Hanz! We had been thinking about it for a while and weighing the pros and cons on another pet ...We didn't want Hanz to be any older before getting another pup, so there wouldn't be such a big difference in their ages, so we really needed to move quickly as Hanz is already 2 years old! Actually let me go back a bit and tell you how it all started! I was on year SIX of my embolization treatments for my AVM and Mark and I were really feeling like our lives were on hold. Couldn't do much between all the treatments, trips and recovery I was going through. We had a Labrador for 8 years and had lost him to what we think were the effects of getting hit by a car. In any case, we talked about what kind of pet we wanted next, and had decided we wanted an indoor, small dog - since our last one had been a large outside dog! We had also agreed to wait until my treatments were over, otherwise it wouldn't be fair to the dog that we had to go out of town all the time. Well, we happened to have an opportunity to have the dog we always wanted after seeing the movie AS GOOD AS IT GETS that came out in 1992 I think - starring Jack Nicholson and Helen Hunt and the super cute Brussels Griffon named Verdell! We acquired a male, rough coat Brussels Griffon we named Hanz that has been such a blessing! Funny thing is, when I would go see my local ENT Dr. Zane - I found out he also has a Brussels Griffon, a female named Ellie! He loved her so much, he also got Brussels pups for his two daughters from the same litter as Ellie! Dr. Zane told me that not a day goes by that he and his wife feel that Ellie is a blessing for them! We feel the same way about Hanz! He has been such a good boy! Smart, cute and loving! It was the hardest thing ever for me to leave him when I would go to CO for a treatment... I mean I would CRY after dropping him off @ my brother-in-law Jim and his wife Shelley's before going on a medical trip! I didn't want my baby to think that Mommy abandoned him! I really think it has taken Hanz until very recently to realize that we are in fact coming back for him every time! We always felt guilty leaving him home alone while we were @ work all day. We had played around with the idea of getting another Brussels to keep Hanz company during the day! I was really bugging Mark about it, because I love Hanz so much and he makes me so happy, that I just knew it would be awesome to have another Brussels!While I know that not every one is a "dog person" - heck we had 5 Siamese cats @ one time - but Hanz was great about helping me forget my medical woes! Do you know how horrible living with an avm on a daily basis is?! If you have kept up with my blog, then you might have an idea. It's nothing like living it though! Lately, I've been having some spontaneous bleeding - Had one @ work while I was standing @ the copy machine. Just as a co-worker walked by and told me I was bleeding, I saw a drop of blood land on the copy paper! A day or so later, I can't remember why I woke up about 4:00 a.m., but next think I knew I realized I had blood all over the front of my nightgown! I quickly took off the humidifier cap I wear on my trache and shook Mark awake to help me! I ran to the bathroom to see that I had a big blob of coagulated blood on my nightgown and the bleeding had come from the inside of my mouth and I was still bleeding! When these things happen, and by the time your bleeding finishes and you clean up the area and yourself, I didn't sleep much and went to work the next day not feeling my best! Lately seems I was getting a lot of being asked, "What happened to your face"?! Do you know how invasive that is? I just can't get over the fact, that some people ignore common sense and good manners and disregard how they may be making ME feel when they ask that! I know my brother-in-law Greg had asked my sister Celia a while back, if there was something they could do for me to make me feel better. I know he was wishing they could do more for me, as to not see me hurting and having so many avm related problems! They see me often enough to know how badly things can get dealing with this avm! Nothing would make happier than to add to our little family with a baby girl that I could dress up and put bows in her hair! I told Mark this is all I wanted for Christmas, our 18th Wedding Anniversary and my upcoming 50th Birthday in May! Every year Mom asks me, "what do you want for your birthday", and I tell her the same thing, "nothing". I feel I have everything w/my husband and Hanz! But now I had my heart set on adding to our perfect little family!So the search started! I don't know how we got so lucky to find Hanz nearby, but it is pretty hard to find a Brussels Griffon in South Texas! I was calling Vets. in San Antonio, Houston, Kerrville and Austin to see if any might know of a breeder to refer us to! No luck going that route, darn! Yes, I tried the Internet - that was everyones suggestion, but most Brussels were located out of state - the closest being Oklahoma! I had been bugging my girlfriends that live out of town if they knew of any Brussels breeders and finally had some luck!Found what we were looking for, a female, rough coat puppy! The one downside was having to go pick her up in Dallas! Yikes! As it is, the breeder was in Oklahoma, but had a friend willing to drive the puppy in to Dallas! Called one of my best buds Dorinda that lives in Pasadena, TX to tell her our excitement about it and right away she said, "Sounds like a road trip to me"! (You'll see a photo of Mark, Hanz and I right before we get in the car to go on our road trip!) I e-mailed another best bud that I've known for 37 years that lives in Dallas and without hesitation she invited us to stay with her on our visit! I explained that while I appreciated the hospitality, we had a friend coming with us and I didn't want to impose! Without missing a beat, Patty said, "Bring your friend too, she is welcomed to stay as well"! Do I have awesome friends or what? Let the fun begin! Well, one of the things that wasn't much fun, was deciding whether to lug my humidifier with us. I need it to moisten my trache area and if I don't have it, I get very dry and start hacking with phlegm! Gross, I know, but this is just part of the fun of my avm world! This monstrosity is heavy and sounds like an air compressor and has parts and water and a hose! Mark packed it! That is really why we really don't wander too far away from home - I have too many needs for my avm to make me comfortable and it's too much trouble to drag everything with me! I know alot of people have worse problems, but mine aren't your basic ones either! I do recognize how blessed I am that I have such an amazing support team and I have hope this will all be over one day!So Mark and Dorinda started planning ... we would drive to Pasadena and pick up Dorinda, put all our stuff into her car and she would take over driving on to Dallas! There is just no way I could help drive with all the medication I'm on! As it is, I slept most of the way over and back! That would give Mark a break in driving, and Dorinda knew the way already, having gone to Dallas many times for her NASCAR races! Dorinda has GPS so we were set! Patty was standing outside her front lawn when we arrived and we were all happy to see each other and Patty/Dorinda were meeting for the first time! They hit it off so well! Both liked each others style and sense of humor! Patty has a very nice home in Frisco, TX and we slept in her guest room and Dorinda in a pull out sleeper in a den. Hanz was such a good boy on this trip! See photo of him on the bed @ Patty's, he slept with us as always! We wondered whether he would get along with Patty's 3 dogs, but they all got along great!There's a funny story about what happened on the way up to Dallas - we stopped along the way @ a rest stop called Buc-ees and Mark and I had never been there, so we were anxious to see what it was all about! It was a huge convenience store/souvenir shop that had a deli and bakery inside. Huge bathrooms, coffee and sodas/juices galore and everything from candles to stuffed toys! I think Dorinda went in first and got what she wanted, while Mark walked Hanz around outside. I think I went in next, then came out to tell Mark all about what I had seen, so Dorinda offered to hold on to Hanz so both Mark and I could go in together. I didn't think much about it and took advantage of the opportunity and when we came back out, Dorinda had a story to tell us! She said my poor baby Hanz panicked when we both disappeared and she said you would have thought we dropped him off @ the pound with the way he was acting! Said Hanz was looking through the glass doors in a panic hoping to catch a glimpse of us, meanwhile people were stopping to pet and admire him. My poor baby thought Mommy and Daddy had left him! I'm so sorry Hanzie! Thank goodness we weren't in there too long!Anyway, next morning, we were to meet up with the lady bringing the puppy in, and Patty had a prior commitment in the morning, so she didn't come with us. I have another best bud that lives in Euless, TX that we had planned to hook up with - Felice, her husband Jon and their baby daughter Emily! Dorinda and Felice know each other, but unfortunately we missed Felice's call in the morning and we didn't get a chance to meet up with her! I had already chosen the name I wanted for our little girl - Bella, after the character in the Twilight book/movie series!We went back to Patty's house and introduced Bella to the rest of Pattys dogs and she jumped right in and played with all of them! We should have named her Dynamite, she is something else, a real live wire!I think I'll end this here and continue this with part II - that way it won't seem like such a long entry all @ once! Talk to you soon!Love,Cyndi

Sunday, December 5, 2010

Good Morning everyone! Woke up to take pain pills and steroid and now I'm going to do what I tried to do last night before sleep necessity took over! I already wrote all the basic things that happened, and overlooked talking about one of the main people that is with me on this journey!

Mark is outstanding as a husband, friend, home health tech.! He totally understands me and what he needs to do to make these trips as comfortable as possible for me! We have been through this routine so many times, and with Mark @ the helm, I'm just following his direction! Mark always has my ticket/ID/Purse or whatever he needs to do that will make things easier for me!

Here are some extra photos from the trip - I just noticed that I had not posted any photos of Dr. Hepworth while we were in his office! Dr. Hepworth is the best! The one photo where I'm holding something black like sunglasses are for me to wear while Dr. Hepworth is looking in my right ear and up my nostrills! Yikes! I get to "see" through these glasses @ everything Dr. Hepworth is doing to me - weird!

Here is a photo Mark took of me @ the hotel - I am so tired I fell asleep sitting up and I wasn't feeling well w/an upset stomach!

Here I am on the way to surgery - Saba has been a part of my trips since I got her! We really had a good trip - just enough time to do what we needed to. Actually could have used another couple hours to shop maybe - but like I said, Mark humors me and tries to make this as pleasant as possible for me! Take care y'all! Thanks again!

Friday, December 3, 2010

Hi everyone! It's been so long since I've blogged, I hope I remember how to do everything! Our trip started on Tues., Nov. 30th - soon as we arrived in Houston, we made a beeline for Starbucks! Felice and Jon kindly had given us a Starbucks gift card, so we put that to good use! Thanks Felice! Arrived in CO mid-morning Tuesday, and headed to the car rental. Mark had suggested we go to Teds Montana Grill for lunch and see our friend, waitress Michelle! I wasn't in the mood for a burger, so we decided to go to the Cheescake Factory and have lunch before my 2pm appt. w/Dr. Hepworth! Wasn't sure what to order since we've had a lot of turkey and chicken lately, so @ the last minute I saw some fried macaronni as an appetizer and went for that w/some passion tea! Mark had some avocado egg roll looking like things and passion tea as well. After we were done eating, we had a little time to run up to the pet store on the second floor of the Park Meadows Mall! See photos of puppies!Headed over to Dr. Hepworths Office, where he checked my air passages and trache to make sure everything is in working order. Dr. Hepworth has a very good bedside manner and is very happy with my progress! He is hoping that in March, if Dr. Yakes said it's ok, then we'll do another debulking then! Mark asked Dr. Hepworth about whether I would eventually have my hearing back in my left ear, and Dr. Hepworth was pretty confident I would! Right now the avm is pushing against something that is making me deaf on my left side - very frustrating! All I can hear is a constant pulse! Dr. Hepworth went on to say that it may not look like a lot of changes are taking place on the outside right now, but is definitely noticeably better on the "inside"!Went back to Park Meadows Mall to look around some more and had to go into St. Nick's, the Christmas Store! Here I am in front of the Snow Babies display. One of my best friends, Dorinda, has a sizeable collection of these in her home displayed in a curio! We always enjoy stopping in @ Borders Bookstore, so we did that, before heading to the hotel to check in! Actually, we went to Whole Foods to pick up something for dinner. We got some pulled pork sandwiches that are really good, along with some sides, like spiral pasta salad. Again, I gave Mark a gift card that Felice, Jon and Emily sent us to Whole Foods and Mark was so busy talking to the cashier, he paid for our dinner in cash! Hijole! So now we head to the hotel to check in and start having our dinner. Meanwhile, I had been feeling a little nauseous so I barely touched my dinner! I kept thinking back to what I had eaten earlier in the day and all I can think of that might have done me wrong is the fried macaronni appetizer? Mark kept telling me to lay down, but I was afraid I wouldn't get up in time to run to the bathroom if I felt that coming back! Yuck! So, I had a miserable night before my procedure! Showed up right @ 9:00 a.m. for pre-registration and got started with all my activities! I think the name of the nurse doing my IV was Angela and she got it done the first time! Usually I'm making sure I have a book to read while I wait, or trying to get comfortable, but I still wasn't completely over the nausea, so I didn't do much of anything but lay there. Dr. Yakes P.A., Kelly came by - lovely in her pregnancy! She is due in early Feb. I believe! We had asked Kelly to find out what # embolization this was for me - and it's actually #34! We'e made 41 trips to Denver - but there were times I was there for another reason, like removing coils and not necessrily getting an embolization. Anyway, next thing I knew, Quinn the anesthesiologist came by to ask a few questions and then it was time to go! Mark always walks along next to my bed as we head to the surgical room. Of course I had to hop off the bed to go to the bathroom one more time, so got that taken care of! The surgical nurses are super nice and like to get in on photos and asked whether we had seen Dr. Yakes yet - since we hadn't, Dr. Yakes came over for hugs and to hear if we had any concerns or questions. He's looking awesome and skinny! I was telling him how happy I was that Shalon is looking so good, and he said that would be me pretty soon! Dr. Yakes felt that we made it a turning point during my last embolization and is very pleased with my progress! He made it sound like it's all downhill from now on! Yay! I sure hope so!Didn't seem like I spent much time in recovery, even though Dr. Yakes told Mark he injected 27 cc's of alcohol this time! I was put in a holding room until my room was ready, and Dr. Yakes other P.A., Mandi, stopped by to "discharge" me as a patient. They'll do this the night before, so we won't have to wait for them in the morning to do their rounds and can leave as early as we want to catch our flight!My sister Celia made me a cute, colorful hospital gown, along with matching pillowcase - I changed in to that after taking a much needed shower! I had some blood in my hair, although Kelley said I hardly lost any blood when Dr. Yakes was injecting alcohol - Dr. Yakes was very pleased about that! Mark stayed with me until 10pm and he headed back to the room. Next morning as always, he brings me a white choc. mocha from Starbucks! Plus, a sticky bun to go with it - yum! One of the times Mark went down the hall, he ran into Don, one of my favorite nurses from my very first embolization @ Swedish that we nicknamed "The Dream Team"! I hadn't seen Don in a long time, so was very happy to see him! My current nurse of the day was Evan, and Evan told me later that Don is the one who orientated him - so I told him Don always did an awesome job! Love nurses that anticipate what you need before you even call them - Don is one of those!Got dressed shortly after Don left and we started heading out to drop off prescriptions and get our things repacked @ our hotel! Oh! almost forgot! Dropped in on Dr. Yakes patient coordinator Sadie to set up my follow up appt.!So that's pretty much our trip this time 'round! I may tweek this here and there, but I think this covers it! Thanks to everyone for their prayer and support! We arrived in CC about 8pm and headed out to Rockport to pick up our Hanzie from Uncle Jim and Aunt Shelleys house! They take such wonderful care of Hanz! Shelley said Hanz seemed a bit bummed after Mark dropped him off Monday afternoon. Luckily from what I hear, Hanz's buddy Bessie cheered him up right away when they started playing together outside! Shelley even bathes Hanz before she returns him to us, all clean and blow dryed! Leaving Hanz is one of the hardest things about my trips - the only way they are bearable for me is knowing what good hands Hanz is in! Jim and Shelley take great care of their 4 dogs and I know they both like Hanz a lot and he adores them! Many thanks!